Tuesday, July 14, 2009

KU Medical Center Day

I'm On the March to Painville

I drove to Kansas City today to see my headache specialist. Have had the appointment for a few months. Also squeezed in a visit to the Immunology department to discuss my horrid hives.

My specialist was pleased with my progress to partially functional, since I was coming from totally disfunctional territory the last time she saw me.

I told her that the Benedryl is having less and less effect, and she said that is a draw back for Benedryl. She prescribed Vistaril, another sedating antihistamine medication to take in combination with phenergan. She said the trammadol I was taking probably wasn't doing much good for the type headache I have, and I said it didn't do much, but was in assistance in sedating me when the headache got bad enough. She said the Vistaril should do the trick, even though it is a low dose. She also mentioned if the oral route of a medication doesn't help with a headache, sometimes it helps to bypass the digestive system, either as a suppository or as a specially compounded skin absorbing cream. She said there just isn't much that can be done for The Headache other than what we are already doing. She said she would like to see how The Headache does after the three month study period, when all the bells, whistles, and programming gets turned on the occipital stimulator. Me too!

The immunologist took pity on my hivey body and loaded me up with samples of some expensive medications. She also said I need to carry TWO Epipens with me. I keep one in the car at all times, but never thought of carrying two in my purse. More blood tests, meaning more co-pay. Sigh. At least I got the free samples!!! I was glad to get reestablished with someone who is used to treating chronic hives. The only allergist I found locally after my immunologist passed away last fall said he didn't treat chronic hives.

I left at 4:30 this morning in order to get to KC in time for my first appointment. I drove through dreadful rain and lightening half the way there, and then bumper to bumper traffic after I hit the Kansas City limits. I had forgotten what real rush hour traffic is like! The Headache did not behave itself, even after I fiddled with my stimulator controls.

Tonight I will be trying the Vistaril to see how it goes, but am waiting until the last minute because I am determined to get some things done. I won't be able to save myself from hurting, since the march to painville has already started and is well on its way, so I'm going to suck it up and see how long I can last. I was able to work for about an hour after I got home, so at least I am drawing some wages for today. Hoorah!


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  2. Who do you see at KU Med? I saw a doc there for a while, but they were not as aggressive as I'd hoped for. It was a good experience, though.

  3. I see a Dr. Jennifer Bickel, a young neurologist who specializeds in headache. All she sees are headache patients. She's the one who recommended the occipital stimulator last fall, because there wasn't much more medicinally she could do. Hemicrania continua is not a good condition to have if you can't take indomethacin. Ironically, she interned at the Headache Center in Springfield, MO (near me I think w/Dr. Cady) that doesn't accept my insurance.


  4. I've heard good things about Dr. Bickel, but I didn't get to see her when I went there. I'm pretty happy with my neuro here in Lawrence, but she seems very knowledgeable.

  5. She practices a part of the week at Children's Mercy and/or Truman Medical I think, so isn't at KU every day.

    I say if you have a neuro you like, stay with him/her! The only difference between a neuro that specializes in headache and a general neuro is their patient population! The treatments are probably about the same.

    Although: the neuro I was seeing before Dr. Bickel never heard of hemicrania continua, and thought my St. Louis neuro's were crazy for putting me on indomethacin. St. Louis wouldn't follow me because I live too far away and was too acute, the local didn't want to take me back because I was too much work. She had referred me to St. Louis neuro's then wouldn't agree with their diagnosis (cluster headache mixed with migraine and paroxysmal hemicrania). Dr. Bickel gave me the hemicrania continua diagnosis in the first hour I met her. What a relief to have a diagnosis that fit!

    I only had that one group of neuro's I could see in network in my local area, and they REALLY didn't want headache patients. Understaffed, they only seemed to have time for life or death patients which headache patients generally aren't. Neurological general practices can be stressful for the practioners because they see a lot of people who will not ever be better. I think that's where they get their (in my opinion) general negative attitude and lack of willingness to read the current literature. You are lucky to live in a generally metropolitan area where you can find neuro's like yours!!!